EveryLife Foundation for Rare Diseases

?? Calling all rare disease advocates in Richmond! Join us for Rare Disease State Advocacy Day to meet with VA state legislators, share your stories, and push for vital policy changes. Here’s your opportunity to shape healthcare policies that impact diagnosis, treatment, and access to care. No experience required—just bring your voice and a passion for making a difference! ???? Registration is open for VA RESIDENTS ONLY now until Jan. 10, 2025. To be considered for a travel stipend, register before Dec. 13, 2024. Click the link below to register. https://lnkd.in/evnbSGXq

Wisconsin #RareDisease mom Katie Moureau knows the Priority Review Voucher #PRV Program isn’t about just one disease - it’s about giving ALL #RareKids a chance. If the #PRV expires, millions could go without treatment. Share your rare disease story below and take action! Take Action: https://lnkd.in/gyQJv_K3 #Cures4RareKids

Don't forget to register to attend the 2024 RareVoice Awards on December 11th! Take a look at the finalists and prepare to celebrate their successes at the Ronald Reagan Building International Trade Center in Washington, DC. Click this link to register: https://hubs.li/Q02WVxKR0

? ?? Let's talk Rare Disease Advocacy in the New Congress! ? On the next #RDLA Monthly Webinar, policy expert, Nick Manetto with Faegre Drinker Consulting, will provide insights on potential opportunities for our rare disease community with the incoming Administration and 119th Congress. ? Join us November 21st to learn more about how your advocacy can make a difference in the new Congress. ? Register here: https://lnkd.in/gftbTYfM

We are excited for the EveryLife Foundation's upcoming Community Congress Annual Meeting and eager to help shape our rare disease community’s 2025 policy agenda. Looking forward to seeing friends and colleagues there! ? #CCAnnualMeeting2024. To learn more about Community Congress and how to become a member please visit: https://lnkd.in/dYTchFSH Matthew Ellinwood Meagan Perry Emily Roberts Melissa Kennedy Lauren Stanford Amy Nicole Nayar PharmD, HEOR Kim Hollander Adora Ndu, PharmD, JD

The EveryLife Foundation is leading efforts to ensure newborns nationwide receive lifesaving screenings for rare diseases. Thanks to RUSP alignment legislation, 50% of newborns in the U.S. now live in RUSP-aligned states. Learn more about RUSP alignment legislation here: https://hubs.li/Q02Y6H170 Learn more about the EveryLife Foundation's milestones and take part in our #EveryLIfe15for15 campaign here: https://hubs.li/Q02Y6XGL0

The Priority Review Voucher #PRV program passed the House, BUT each day the Senate delays is another day patients, advocates, & families worry about their treatments & future. #Cures4RareKids can’t wait any longer! Tell your representatives to stop delaying and renew #PRV! https://lnkd.in/gyQJv_K3 Grant Bonebrake

??? Join us today for the RDLA's "Share Your Story Through Film!" Webinar Discover how film can amplify the voices of the rare disease community and connect with audiences in a powerful way. Whether you're an advocate, patient, or supporter, this webinar will provide insights on the impact of storytelling through film and resources available to help bring your story to life. ??? Speakers: Daniel DeFabio - Global Genes Kristin Smedley - Curing Retinal Blindness Foundation (CRB1.org) Madelyn Saner - YARR Shaylee Boger - YARR Don’t miss this opportunity to learn from experts and advocates who are using film to make a difference! Register Here: https://bit.ly/4eqaJwT?

As Congress returns to work, it’s more important than ever to remind our officials to renew the #PRV before it expires at the end of the year. As Lori Trahan highlights, the PRV Program could save children’s lives. Take Action: https://lnkd.in/gyQJv_K3 #Cures4RareKids

Rare diseases impact not just patients, but parents too. The Priority Review Voucher #PRV Program can transform the lives of entire families. What is your #rare story? Take Action: https://lnkd.in/gyQJv_K3 #Cures4RareKids, #Hyperoxaluria, #EveryLifeFoundation Oxalosis and Hyperoxaluria Foundation